Recently, with the help of Christmas present funds and my new-found ability to save money, I have had the opportunity to do something I have been longing to do ever since I gave it up almost ten years ago after I left the DJ business – re-start my vinyl record collection and purchase a turntable. Most people consider vinyl records to be obsolete, from a by-gone age of music that went hand in hand with Volkswagen mini-busses with carpeted interiors and psychedelic mushrooms. In reality, though, the vinyl record scene is making a comeback right now, and for good reason – there are just certain things you cannot duplicate no matter how much technology you employ.
As I sit here and listen to a little bit of Led Zeppelin on the turntable, it occurs to me that I may be just like the vinyl record – obsolete and from a by-gone age of medicine. As most of you know, I am still suffering through the aftermath of having my ankle replaced. It has been quite an ordeal, much to my chagrin, and even though I expected it to be as much of a breeze as my previous joint replacements, I have been sorely disappointed at every turn. The recovery period is proving extremely lengthy, and my progress is now measured in healing per month rather than healing per day. I don’t expect to be fully recovered (if that is even possible) for at least one calendar year from the surgery date, and that’s a conservative estimate. The surprising part is that even my hip replacements where the entire top half of my femur was removed did not take this long to heal. Those of you who read my column know all of this already, though. What has occurred to me over the last few days is just how much of a dinosaur I truly am. Joint replacements are now a much less common occurrence for children who have been diagnosed with autoimmune Arthritis within the last ten years.
The latest development in the treatment of autoimmune disease, disease-modifying anti-rheumatic drugs (DMARDs), has been a true Godsend for children who are diagnosed with the same childhood illness that I suffered from – Juvenile Rheumatoid Arthritis. Today, though, as a true sign of just how much of a dinosaur I am, “Juvenile Rheumatoid Arthritis” as a disease does not exist any longer. Now, the closest thing to it is called Juvenile Idiopathic Arthritis. While the diseases are ostensibly the same, the name change is a very good indicator of just how much the thinking towards these diseases has changed over the last 25 plus years. JRA simply names the disease and its symptoms while JIA, on the other hand, uses the term “idiopathic,” which denotes that the cause of the disease is still unknown.
This name change alone represents a dramatic shift in medical thinking that has taken place over the last ten to fifteen years. When I was diagnosed with JRA after two years of being considered for every single other disease out there, it seemed the book was closed on the cause of the illness, and it was never discussed. When we asked doctors what had precipitated the disease, we received answers ranging from “the effects of a leftover virus” to the “result of an insect bite.” Doctors did not know where it came from, frankly, and they were only interested in treating the symptoms. Today, as the change in the disease name illustrates, the medical community is much more interested in what causes the disease and its symptoms, and this change in attitude resulted in the development of the biologic drug agents which have revolutionized the treatment of many of the autoimmune diseases.
Because children today have access to drugs like Humira, Enbrel, and Rituxan from day one, they will probably never have to know the horrors of suffering through a joint replacement surgery. The DMARD class of medicines helps prevent joint damage on a level that was not seen in the early days of my diagnosis. And before you ask, yes, there are times when I think about what my life might be like had I been able to use Enbrel or Humira from the beginning. Just like other missed opportunities in life, though, if you spend all your time looking back then you miss the things that are right in front of you, so I don’t dwell on it. I do feel much better every time I hear of a child who has been diagnosed with autoimmune disease, though, knowing that he or she will be able to limit the joint damage from the start, and thus may never have to deal with a full joint replacement. Make no mistake, either, it seems like every day I hear of another child who has been diagnosed with JIA or Chron’s Disease or Ankylosing Spondylitis. Whether or not the numbers bear this out, I can’t say, but it sure seems like autoimmune disease is on the rise. Either that or doctors are simply using the autoimmune diagnosis more than they did when I was young, which could be entirely possible. Either way, when I was handed my JRA diagnosis at age ten or eleven, we had never heard of the disease before, much less heard of anyone else who had it or any similar disease. In addition, without the Internet to help us at the time, there was really no way for my mother to find other local parents who had children who suffered from JRA. Interestingly enough, we eventually met someone right in our town that had a son my age that also suffered from JRA, albeit a much less severe case. That’s for another column, though.
You can see why I feel like my disease and its consequences represent the archaic way of thinking when it comes to Rheumatoid Arthritis. With stem cell research and cartilage replacement therapy, I know that someday soon joint replacement will be looked upon with the same horror as blood leeching and lobotomies. Then again, there is also the fact that with so much to suffer with, I have learned that I can deal with anything that comes my way, no matter how much of me is made of metal. The more adversity a person has to overcome, the more easily they learn to deal with that adversity, or, if you prefer, “whatever don’t kill ya makes ya stronger.” So, just like my vinyl records and their analog sound that digital just can’t duplicate, maybe there is some merit in the fact that my disease path was and is a bit more bumpy than those who are diagnosed today. Don’t get me wrong – I wouldn’t wish this horror on anyone, but there might be some benefits of the more difficult path I have had to walk that patients today will never know. What’s that about silver linings?